I have once again been trying to use my, ‘if I don’t think about it or write about it, it can’t be happening’ theory, as always it doesn’t work. Why it should work now any more than it has in the past, I don’t know, but I just have to keep trying, just because well who wants to listen to me moaning all the time, I know I don’t. So all I am going to say is, my guts are no better, but I have been able to eat just a bit more than I had, I guess I am stuck like this for a while and all I can do is accept it for what it is and wait and see where it goes. I did find out something a few days ago thought that has left me thinking and has made me wonder about the truth. When ever I have mentioned to my neurologist that I was feeling sick a lot of the time, he told me it could have nothing to do with my MS, but I had noticed for a long time that a lot of people with MS, were also saying they felt nauseous, so I did another one of my mega searches of the web and I found discussion board after board, with people all who have MS stating they where having or had had long spells of nausea, then I found one medical site saying quite clearly that it is a symptom and then I found yet another. I can only assume that this means it depends on who you talk to, just like it was many years ago when it came down to does MS exist or not, for once though I am happy to put it down to my PRMS as that is what I have been blaming from the start. It does make me angry though as I was put through so many tests when years ago I found I simply couldn’t eat as I felt so sick, just as is happening now, but tests that I never needed as it was as I kept telling them my PRMS, but the rest is history and all written about before.
I was surprised on one site to also find something both Adam and I are very aware of, but I never once thought it was my PRMS, poor hearing. I have been going deaf for years and I always blamed it on my years of being a DJ, not the best environment when it comes to protecting yourself from deafness. I seem to spend half my life either turning the TV up or asking Adam to if he happens to have the controls, or even more annoyingly for Adam, asking him to repeat what he was saying as I simply hadn’t heard, or what I heard just couldn’t be right. I don’t know if reading and finding out that I have yet two more symptoms is good news or not, I didn’t really need any more as it was, but I suppose being able to pin them to their correct source is better than wandering around making stab assumptions, now I just need to get my doctors to accept them as well.
Last night found me actually squealing out loud in pain, that is something I very rarely do, when you have lived with pain as for a long time, you become used to it and as long as it appears where it always has been, it rarely catches me out. Neuralgia is the only thing that causes me to suddenly jump of react, as there is nothing like nerve pain to stop you breathing and grab hold of the effected area. I had been sat earlier in the evening nursing extreme pain in the tip of my middle finger of my left hand, so intense that I would have quite happily have sliced it off at that second. It was just the tip and it only lasted about 15 minutes, then faded and vanished. I had actually even totally forgotten about it when I squealed and grabbed hold of my left hand with my right. I felt my entire body twist and curl towards it as I had never felt anything like it, even when I had the skin between my thumb and index finger pierced, I didn’t react like I did last night. The pain took over the entire index finger and thumb, right down to my wrist and although it left as quickly as it appeared only really causing pain for about 30 seconds, trust me it was the type of pain you don’t want to have. Most pains leave a residue, like an ache that is a shadow of the area effected, it usually only last a few hours and will vanish as did the initial pain. This one left behind it something I can actually still feel, not so much a shadow as a line of sharpness that runs down both finger and thumb, them up my forearm to the crease of my elbow. It is like something has inserted a wire along that course and keep pulling on it, because they can. It is also easy to imagine that happening with a lot of the symptoms our health throws at us, the idea that which ever illness it is, is this small evil gremlin type creature that takes a strange pleasure out of reminding us that it has control and what it can do to me.
It isn’t only the pain in my left hand that has my attention, in fact just before it happened I had been playing with the sensations in the palm of my hand. I had noticed in the last couple of weeks that there is an echo effect in the sensations my hand is picking up, if I drag my nails over the palm of my hand, I don’t just feel it while it is happening, I feel it just as acutely for the next few minutes as though I am still somehow in the process of pulling them over my skin, the same goes if I were to dig them into my hand, I will feel it at it’s most painful far past the time I have left it alone. Ever since the time it died, I have been playing with that hand constantly, it took me about a year of playing to get it back to the point that I could really say it was as useful appendage. Even today it isn’t more than 90% of it’s friend on my right arm, my playing with it is partly in the hope that it will improve more and partly out of fear that it just might stop working again, it isn’t the type of thing that anyone wants a repeat performance of.
I know I have asked this question before, but it doesn’t matter how many times I search or how many times I ask, I just can’t find the answer to it and I hate not having the answers. Either I don’t understand how drugs work, or I don’t understand the truth of the pain I am in. I just don’t see how I can be on such high doses of pain killers of different sorts, all designed to deal with different pains, which work with my every day condition extremely well, yet I can still feel a pain like I did last night. Either they were working perfectly and the truth of the pain from last night if I wasn’t on them would have been incredibly worse, or they don’t work in the way I think they do. I see my drugs as being a huge thick duvet that is lying over the gremlins, keeping them in the dark so that what they do, is felt through that thick blanket or not at all, or if you prefer, they turn down all my pain receptors. This though would mean that I either shouldn’t feel most pains at all, or what I do feel is a fraction of reality, so how bad would that pain have been without them, I can’t believe that my hand without anything happening to it, could produce pain that bad, yes if someone minced it for me, but not just hanging of the end of my wrist. When I watch TV and see drams set in hospitals and I hear the doctors ordering 5 – 10 mg or morphine for people who have been in car crashes, well surely someone who has 70 mg floating around in prolonged relief and can pop 10mg fast relief when needed, shouldn’t feel anything. Maybe it is a good thing that it is my doctors not me who works out what dosage I need, I just know when to take them and when the dose needs changing as the pain is breaking through big time.
Having read many of your posts and Tweets you never cease to amaze me and may you find peace and less suffering week in week out from now on 🙂
You are in my Prayers and those of many others constantly of that I am sure.
Hello again, I want to Let you know that when I read your posts every day it mirrors almost exactly what I’m going through on a day-to-day basis and have been going through for years My left arm had two weeks of pain stabbing, nerve pain before it went totally numb almost one year ago today. I thought that I had had carpel tunnel syndrome for many years and as it turns out I do not, it is my MS related nerve problems, but my left arm and hand were almost completely useless for two months (thank God feeling returned when it did), although I did have to have two months of physical therapy three times a week to get it to respond, but it did come back! you’re definitely not alone with that symptom as I’m sure you already know The nausea you’re feeling is absolutely related to MS (unless there is another medical problem which you need to seek care for ). You may notice that your speech is worsening lately as well? I’m also going through that pretty regularly, if the food does go down (50% of the time) then my neck/throat spasms and spits the food back up leaving me choking. It is interesting how you can be hungry and nauseous at the same time while being unable to eat…? I find that sitting is easier to eat some times and I’ve noticed that you write about standing for you is easier to get food down.. That is so far the only difference in your symptoms and mine as I have read so far My husband Anthony (just like your Adam) gets to enjoy all of these strange symptoms with me too… My first recognizable symptom/CIS that led to my eventual MS diagnosis was my acute hearing loss (70 to 80%),and it’s origin per my ENT doctor was neurological, of course.. Everything is neurological from my acute vision loss to the lack of sensation of my left arm and hand (Right Parietal Lobe lesion explains that one). Regardless of what the cause, it is absolutely exhausting getting poked and prodded all the time and even just getting someone to diagnose you and try and treat you as an MS patient (without just assuming that everything is caused by MS). I find that I’m very reluctant to go to the ER or urgent care anymore because it’s all neurological Your writings do give me hope,joy, laughter and I feel sadness too because it’s all just so familiar, yet scary… Be well ( as best you can be:)) also remember the stress of the holidays take it’s toll on US so plzz take it easy. Andrea
More hugs from me too xxx
Actually we’re more alike than you think, it may have been the way I wrote it, but I was standing in the kitchen and couldn’t swallow, yet once sat in the living room, I could. We do seem from what you have written to share too much really, MS is such an odd beast that to find anyone who shares more than a handful of symptom is really rare. Do you have PRMS or RRMS?
I can’t believe we were also both originally diagnosed by an ENT specialist, that is just freaky, I went to mine due to balance issues, so we manage one separation on that point at least.